My mum had heart failure. Was placed in a nursing home for end of life care. A DNR was placed on her . She went down really quickly and last few weeks of her life she was tormented having hallucinations. It was awful
On her 6th day. I was called at 5pm to go in she had deteriorated and the nurse said she was calling an ambulance. I asked why. And said not to as she had dnr. An ambulance won't be able to help her. She's dying. . And at this point was unresponsive
When I got there 30 mins later. An ambulance was there. Now we all know the ambulance situation I struggle to see that got there before me . And when I got to mums room . And knocked an ambulance man came out. And said. We tried working on her. . But we're unsuccessful and she had passed 10 min ago. So that ambulance must of been there when they called me. At 5pm.
I asked how long they'd tried he said 20 mins. So I know they were there bef6i was rang. Then a nurse came out. Not the one I'd spoken to. I fount out it was a carer after
Anyway I then said. I told you not to call an ambulance she was here for end of life care and had a dnr in place. She went white. The colour drained. She said . Oh I wasn't aware. And then they said we will just clear room and you can see mum. 1 hour they were in there. And 1 nurse. 1 care assistant . 3 ambulance crew came out ??? I don't know what they were doing. I went to see mum. She was black and blue everywhere. Sher face it was awful. She should of gone peacefully but instead they put her through all that for no reason it was never going to save her. 8 months on I'm very angry. I want to complain. But who to were they even correct in doing that. ??
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Jencpj71
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Welcome to our forum and I’m sorry to hear of this sad experience. I’m not surprised you still feel angry.
You could address with the nursing home and they might offer further apology, mutter about improving their communication procedures and you might feel slightly better or worse for having to relive it all again.
Sometimes sharing the awfulness, the unfairness, and how it has made you feel can ease a small proportion of the pain.
I would be angry too but what happened wasn’t your fault and your Mum would not want you tormenting yourself. If it’s too painful to step back, move forward or be in this place, then ‘just be’. Allow yourself to mourn with knowledge that it will never truly pass but get better little by little when you are ready to allow it.
Have you spoken to any family or friends about how unhappy you are still feeling?
I am so sorry for your loss and the horrendous experience you had at what was already a most difficult time. I lost my mother 5 months ago, she also had heart failure and was in a care home. I think that possibly an ambulance has to be called depending on the rules of the home to assess the situation but they should not have treated her when you had a DNR form. The communication between staff in some homes is appalling and you have every right to be furious. When my mother died they informed my brother when I had it perfectly clear that I was the only one to be notified, it just adds to the distress when they get it wrong. I would complain to the home and if they have a parent company demand an explanation, that's just me though. It is a terrible time for you and I truly understand but once you've had your say try and let it go, I know that it's not easy but that anger won't do you any favours. My thoughts were with you. Take care of yourself.
Hello. Thank you both for the kind words. I do feel slightly better in just writing it down. And reading it back. I think. I will write to the home Also at the time. The hone in question had , had auditors in . And not sure who but they looked into medication and nursing notes and found lot of discrepancies. Dangerous low level staffing. The 3rd day i visited mum . She was in same nighty. And said she'd not had wash . Or meds . Or breakfast she had just finished lunch. Tray was still there .I looked for 15 staff for 15 mins. . In the end bumped into a kitchen member .who was still taking dinners out. And having to feed some residents it was 3 part home. Residential. Nursing and dementia and altzimers patients. It was 2pm
Poor girl was rushing around. I went back to part where mum was . There were several alarms going off in rooms people shouting for help for ages when I'd got thete most were going so this was 30 mins. I am a wheelchair user. I went to the rooms of the ones shouting. buzzing . They wanted toilet. Meds. Some of them were OK. I. Just had to move tables with lunch on . And some could go themselves. Others couldn't. And one poor woman was still waiting to be fed. Her dinner stone cold on tray. She had tried but couldn't manage. Luckily there's a staff room with microwave. I heated it up and fed her
A member of staff finally arrived at 2.20pm ran around turned alarms off said she be back in minute. Still no sign 15mins later. She was in staff room. Saw me .came out. Said it was just her for 30 beds on residential and 35 on nursing. And 2 staff on dementia. Alzimers. 28 patients . 1 nurse . Absolutely ridiculous disgusting so all that was going on. My mum wasn't being cared for properly. I'd of had her at my house but being disabled and only 2 bedroom my and gf in small room. Me my husband in other . Plus I can't look after wash and dress her etc as I need help myself.
I know an agency and a 3 women have taken over to straighten it out . Now fully staffed and doing better. I may write to them.
Is it legal for the home to call ambulance. And get cpr etc they'd used defib as well. When it wasn't going to save her she had heart failure. She was in for end of life care .and had DNR. ???
Does it really matter under these circumstances? 😉
Having gone through a very similar experience with my sister last year, I totally empathise. It’s truly dreadful.
How to move forward is difficult. After we had laid my sister to rest, there was an urge to investigate, complain and seek retribution. In the end we decided to bury the terrible affair and laid it to rest too. My sister wouldn’t have wanted us to do otherwise. You are in my thoughts.
WOW - how truly awful for you all. We live in such a sick world just now.
"She went down really quickly and last few weeks of her life she was tormented having hallucinations. It was awful"
Please find out the medications she was being given - Midazolam-morphine is known to cause hallucinations. The combination also suppresses breathing - it's popular in care homes ):
Your reply about meds in care homes prompted me to mention a couple of drugs which are commonly used and which are frequently used among older populations, both in the community and in care homes.
When I was in my fifties, I developed an irritable/overactive bladder and was prescribed Oxybutenin. I was still working at the time. On Day 3, I developed frightening disassociation, short term memory loss and confusion. I’d had no such problems before and didn’t associate it with the prescribed drug. My husband collected me and took me to our GP. He told me that I was suffering from a rare but listed side effect of this drug. Apparently it crosses the blood/brain barrier which can cause these side effects.. He flagged it on my medical record and a urologist subsequently prescribed transdermal patches of this drug which caused no problems.
A few years later, I had a spate of UTIs and was prescribed Nitrofurantoin, a popular antibiotic and first line treatment. This had exactly the same effect and is another drugs which crosses the blood/brain barrier. This, too, was added to the list of ‘No No’ drugs on my records.
These two occurrences made me wonder if the high levels of confusion among some of our frail and elderly can be contributed to the use of these drugs. UTIs in the elderly are known to cause confusion anyway. If you add these two meds - or even just one - into the mix, it could explain alot.
In both cases, these side effects were listed on PILs as ‘Rare’. I do wonder just how rare they actually are and in how many cases no connection is made.
Yellow Card reporting is a vital part of the process of identifying and listing ‘unwanted effects’. It’s unlikely though that these side effects would be recognised or reported in the context of elderly care
For anyone who wants more information about Blood Brain Barrier (BBB) this is a useful read
These two occurrences made me wonder if the high levels of confusion among some of our frail and elderly can be contributed to the use of these drugs. UTIs in the elderly are known to cause confusion anyway. If you add these two meds - or even just one - into the mix, it could explain alot.
It certainly could! Bravo for "thinking" that. As for
In both cases, these side effects were listed on PILs as ‘Rare’.
Just as an example, "they" also said that (re the Covid jabs) e.g. myocarditis was "rare" - they LIE all the time.
Yellow Card reporting is a vital part of the process of identifying and listing ‘unwanted effects’. It’s unlikely though that these side effects would be recognised or reported in the context of elderly care
Hmmm...the MHRA (it may have been renamed recently) is lip service only. Mostly privately funded (e.g. the Gates Foundation). No one has the available "time" to fill out their way over complicated reports anyway apart from the fact that a large majority just don't care.
My understanding is that whether side effects are categorised as ‘common’, ‘rare’ etc is statistical and the information derived from reports via Yellow Card reporting. Therefore no calculation can be made of real risk until the drug has been in use for long enough to attract significant numbers of Yellow Card reports.
This is why it’s so important that everyone - medical staff, patients, carers - report any adverse effects without delay.
My first husband died after suffering a brain bleed caused by Rosiglitazone, a newly marketed anti diabetic medication. He’d been complaining about side effects for some time. It was withdrawn but is now used again in certain circumstances
My point is that all drug users have a responsibility to monitor and report all side effects. You don’t have to prove that they’re related to the drug you’re reporting it’s a case of assisting in the compilation of a data base.
I’ve reported to MHRA and found it quite straightforward
Yes we did . And she was taken off them and it didn't seem to relieve her her dr said. Her hearts failing to pump blood around etc. So it affects the brain. She didn't know what was real and what wasn't kept saying staff were stealing her things. And 👄 about her. I had to go through everything. And show her everything still there and talk her down. Then she'd say. So it's not real I'm just imaging it. Yes mum. It was awful. For her. Plus lack of care . I was relieved when she passed for her sake. She was at peace. But angry at what they put her through. She just should of slipped away peacefully. Instead they pump her full of drugs did cpr defib etc that should not of happened. Its verging on incompetence that the nurse on duty. Hadn't read her notes. And wasn't much to read as she had only been there 6 days . But I couldn't care for her. As I'm disabled myself. And her mobility was very poor. She could only stand long enough to pull things up she used a wheelchair herself. I just couldn't care for here. I'm just angry
I send my condolences to you that your Mum had to go through that experience. It's the last thing we'd want to occur as the majority of us would prefer calm and lovng care till the end of life .
We hope that any of our family members will be treated so that they remain at ease and painfree.
I am so, so sorry to hear this, you must have been shocked, upset and angry, and probably still are. This comment may or may not help. Many years ago my brother died, aged 13. He had said he did not want to be brought back if he was dying, he had been through many operations and was not afraid of death. Instead my mum called the ambulance and they worked hard on him on a cold hard floor, as did my older brother's girlfriend, a nurse, until the ambulance arrived. I grieved and grieved thinking about his last experiences but then a new thought came to me ... perhaps he needed it. Perhaps when the time comes we all want to know that people want us to live, perhaps it is after all what people need at the end. I am sorry if this does not ease your grief and pain at all and send you every sympathy.
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